In the seventh of the ME Association’s ME/CFS experts video series on the immune system and viruses we’re really getting into the heart of things. Dr. DeMeirleir co-wrote a densely technical book on immune interactions in ME/CFS called ‘Chronic Fatigue Syndrome A Biological Approach’ about a decade ago and he’s well versed in the immune side of ME/CFS. Problems in the immune system, he believes, are at the core of this disorder.
Pathogens
Dr. De Meirleir reports many patients have multiple infections but pathogens are not the culprit…..
Pathogens in chronic fatigue syndrome (ME/CFS) are a controversial topic at this point. They’re a focal point for some physicians and hardly considered by others. It may be that patients with pathogens tend to flock more to some practitioners or some practitioners just don’t test for them. The fact that many of the pathogens associated with this disorder are either hard to find or are believed to exist in strange forms doesn’t help.
In any case, we’ll know a lot more about the role viruses play in chronic fatigue syndrome as the Chronic Fatigue Initiative’s pathogen studies start appearing this year but Dr. De Meirleir believes pathogens provide a starting point for about half the chronic fatigue syndrome population and that several infections are active simultaneously in many patients.
He described a process where infections stir up a disturbed immune system that’s not powerful enough to handle the pathogens but is still plenty capable of making your life miserable. Describing a kind of cascading process of debilitation, De Meirleir believes the immune system continues to buckle under the strain over time in many patients, further exacerbating symptoms. Don’t hold the viruses responsible, though; it’s that under-functioning immune system that is definitely the culprit.
Still the pathogens are there and they must be dealt with. We haven’t heard much about enteroviruses lately but Dr. De Meileir endorsed Dr. Chia’s finding of 80% prevalence in the gastrointestinal system. (Speaking of which De Meirleirs video on the gut, a big focus of his, is going to be interesting. Given that Dr. Chia is an infectious disease specialist we might also expect a higher percentage of virus infected patients in his office.
Dr. De Meileir finds the usual suspects (HHV-6, EBV, Cytomegalovirus, parvovirus) as well as bacterial infections (mycoplasma, chlamydiae) and parasites (eg. Giardia). This many pathogens obviously points to some sort of hole in the immune system.
Dr. De Meirleir nominated a mutation in the T cytotoxic cells, dysfunctional and low levels of natural killer cells (NK) and nagalese. Proof of immune activation comes in elevated cytokine levels. Cytokine study results have been all over the map in ME/CFS but Dr. DeMeirleir description of patients with high cytokine levels brought to mind patients with similar immune signatures seen by Dr. Peterson and Dr. Klimas. (How interesting that multi-site ME/CFS expert study will be; these immune activated/challenged patients should pop out in that study like popcorn. ).
Dr Meileir noted that the list of cytokines, chemokines and interleukins associated with ME/CFS was just the beginning; he’s identified other immune abnormalities that are in medical limbo for the time being. These immune factors are present in elevated levels in ME/CFS but no one knows quite what their significance is.
Nagalase
The big news from the De Meirleir clinic now are elevated levels of nagalese, an enzyme that knocks out macrophages – the major garbage cleaners in the blood. De Meirleir reported nagalese is elevated in almost all (97%) of his patients. Macrophages, it turns out, have to be prodded to act and nagalese stops this from happening. (Both Dr. DeMeirleir and Dr. Cheney reported on nagalese levels in association with GcMAF at the Ottawa ME/CFS Conference.)
So where is all this nagalese coming from? In one of those devilishly clever pathogenic strategies some intestinal bacteria appear able to produce it ( presumably in order to keep macrophages from gobbling them up). That’s the theory right now, it hasn’t been proven but it does provide the enticing possibility that fixing the gut could help out the immune system.
Surprisingly, no mention was made of RNase L and the interferon system Dr DeMeirleir was so involved in for years. Both Dr. Peterson and Dr. Lombardi believe that enzyme plays a key role in some ME/CFS patients.
Thanks for this. I am still unclear what all this means. Is it saying the Nagalase producing intestinal bacteria are the root cause of the dysfunctional immune system or is it saying as we have a dysfunctional immune system keeping the Nagalase levels down by treating the intestinal bacteria will then give extra help to an already separately dysfunctional immune system? Many thanks
Maybe one day it will be clear which is the horse and which is the cart. Meanwhile, there being at present no ‘silver bullet’ to fix whatever needs fixing, could any of you post or direct me to a list of supplements that help with symptoms, effect general well being, and/or which are aimed at nerve pain especially, or at immune /gut health. OTC items. I seem to have too much info. Starting back at square one via trial and error.
Great to see Cort – KDM right on the button as they say. Strangely right from my own beginnings with a sort of constant ‘flu like illness I thought how long will my Immune system cope with this. It didn’t.
Well said. Enid…”It didn’t” – I don’t know why that made me laugh but it did. I’m glad I escaped many of the flu-like symptoms – I think they’re worse than the muscle and head pain I feel…
Interesting you escaped the ‘flu like symptoms Cort. Recalling more clearly the first I knew was ( out of the blue) vertigo whilst not feeling ill in any way. ‘Flu like symptoms came later (Immune system buckling ?) and tend to agree with an initial pathogen of say the herpes family (anything infecting the nervous system). Downhill all the way from that point with everything members report on PR. Love your graphic “bugs” – I’d suggest the one bottom right hand corner. Looks very likely.
Humour aside (definately unfunny when one’s going through the “black holes” stage), I feel this and all you mention here is the closest now to finally unravelling.